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Friday, December 8, 2017

The Big Bloom

The past couple of months have seemed like an eternity. I wasn’t sure Alex and I would survive the stress. Seriously, we both came within millimeters of a breakdown. Between getting Ben and Jonah to their IV appointments every day, picking Aidan up early every day to homeschool him for two classes, Ella’s ongoing school issues, and everything else life decided to throw at us, it’s seriously a miracle that we seem to be coming out the other side of this darkness.

Ben and Jonah have been getting IV ozone, glutathione, and Meyers cocktails every day. They have each done five weeks. The sessions were staggered, so when Jonah finished, Ben still had three weeks to go. I’ve been commuting to the IV clinic like it’s my job. Every day. For months. The boys had to get picc lines to make their IV treatment easier. This is serious business, fraught with a lot of unknown. As a parent, when you are putting your children through a lot of stress and drama, and there is a lot of unknown about the outcome, you feel a lot of emotions. I was sad that my boys didn’t feel well as part of the treatment. I was worried they would get infections from their picc lines, or the lines would fall out somehow and there would be blood everywhere and I’d have to figure out how to deal with it. I had to flush those picc lines each Saturday and Sunday, holding my breath and praying nothing would go wrong. I had to advocate with our incredible high school to get the boys homebound tutoring while they did their treatment. But my biggest, scariest fear was that we would do all this and nothing would happen. We wouldn’t see any results, after all this time, money, sweat, blood and tears. That was my very biggest fear, looming over my heart every single day.

You may wonder why we would go to such lengths to find our boys renewed health. You might think we’re insane for taking on such a monumental task. Insurance doesn’t cover most of this treatment, so we’ve also taken on a lot of debt. You may think we’re crazy.

But let me tell you, when you spend a summer watching your children disintegrate before your very eyes, tangled deeper and deeper inside their illness, you will do anything to save them from that darkness. When you look into your husband’s eyes across your son who is raging on the floor, and see your own desperation and raw fear mirrored there, you realize you need to move heaven and earth to figure out how to fix your boy. When you seriously contemplate calling 911, or hospitalizing your child, repeatedly, because you don’t know how you can possibly handle what is happening on your own, you know that if you find a glimmer of hope, you will jump at it. When you think you will most likely have to place your children in residential care because there just is no way they can live with you, you know that if the possibility of help comes your way, you will grab it, no questions asked. You will spend whatever money it takes, you will drive whatever distance, you will give whatever time is necessary, if only you can help your children lead a healthy and happy life. If you have walked in our shoes, and seen this darkness firsthand, you would completely understand why we have made the decisions we have.

The effects of this IV treatment have been subtle, yet powerful. The medicine makes you feel sick a lot. Brain fog, nausea, fatigue, muscle aches. But then we started to notice other small peeks of hope. It started with Jonah, who began treatment first. One day he realized his tics had stopped! Then we noticed that he wasn’t overwhelmed by sensory stimuli the way he used to be. He became less anxious. There was a lightness, a relaxation about him. We wondered if it was our imagination. We wondered if these positive gains would be fleeting, like so many other interventions we’ve tried.

Ben began treatment three weeks after Jonah. He has felt more sick than Jonah did. But then we started noticing differences in him also. One day we realized that Ben was getting up when his alarm rang! This has never, ever happened. He was always just too fatigued. Then his rages started decreasing. Some of his tics went away. Like Jesus’ mother, Mary, I “held these things and pondered them in my heart.” (I just love that phrase) I was afraid to hope too much. I still worried that I had steered this family ship into uncharted waters, and if nothing happened, it would be my fault that we had wasted so much time and money.

Every day, I watched my boys intently, secretly. Have you read the children's book, “Leo, The Late Bloomer?” I love how Leo’s father pretends not to watch for signs of his son blooming, but there he is, in every picture, hiding with eyes wide open—watching for signs of the Big Bloom. I was watching for the Big Bloom too, holding my breath.

Then Jonah started brushing his teeth-- without me begging. He showered every day. After he got his picc line out, he popped out of his bedroom each morning with bright eyes, ready for school. Although he had been worried during his treatment that he would not be able to participate in his choir concert because he wasn't prepared, he worked so hard and in a week and a half learned all the music. He was excited and proud to be a part of a beautiful concert. 

One day, Ben and Aidan were home alone for a couple hours. When we got home, Ben announced he had cleaned the basement. Picture my jaw on the floor. He hadn’t just shuffled the mess into a corner; he had put all the toys away. He had even VACUUMED

We went to my brother’s for Thanksgiving. It was a perfect day, filled with amazing food and beautiful family. Ben and Jonah went into the basement to play with the younger kids. They have never done that. They played games with the whole family. ALL WITHOUT GETTING OVERWHELMED. 

We used to wake with a jolt on weekends, with panic in our hearts, because of the rages that had already begun while Alex and I had the nerve to sleep past 5:30. There have been no weekend morning rages since starting ozone. Ben and Jonah have gone to activities together without arguing, like church youth group and rehearsals for the holiday play they are both participating in. The other night, Ben brought Jonah his dinner plate, just to be nice. And then went back to get him a fork. The boys volunteered to help Alex put up Christmas decorations outside for the first time ever. They have brought in groceries from the van without me asking.

I’m just completely floored. I’m astonished. I’m grateful and hopeful and humbled. And mind-blown.

I know these things sound mundane and typical. But in our house, each of these small things is a complete, astounding, astonishing MIRACLE. These actions represent things that Alex and I always hoped for our boys, but things that never happened. It isn’t that the boys didn’t want to do all of these things before; they just weren’t able to. Their inflamed brains were just not capable of handling the sensory input, motor planning, emotional regulating component of all of these things.

As each of these incredible improvements happened, I tried to contain my excitement so that I wouldn’t overwhelm the boys and make them creep back into darkness. But I was just astonished at what I was seeing. For instance, the boys adore their cousins and younger siblings, but were usually just too overwhelmed by life to interact much with them. The younger kids in our family are full of life and noise and excitement: too much for Ben and Jonah. They would get overwhelmed easily. At Thanksgiving, for the boys to voluntarily go play with their younger siblings and cousins was a total miracle. And to listen to them all laughing and having fun, that was a gift I will cherish forever. For the boys to be able to play a game with the younger kids, and not get overwhelmed and ragey, that was another miracle. For Ben to have the energy to clean and vacuum the basement…astonishing. I cannot convey to you the incredible phenomenon that these small events meant to me. If your family naturally, easily does these things, you wouldn’t understand what a struggle every moment of life is for our family. Or what a gift it is when these things are no longer a struggle.

When we began ozone, all I wanted was for the boys to be able to handle life a little bit better. For them to be able to get through a weekend without it destroying them. For there to be fewer rages. For there to be more resilience for life’s frustrations. I wanted these things, but I didn’t expect them, because I’ve learned to never get my hopes up. When you get your hopes up, all that can happen is for them to be crushed. I’m a naturally hopeful person, so it’s hard to temper my enthusiasm. When Jonah realized on the way to ozone one day that he wasn’t ticcing anymore, I wanted to jump up and down in my seat and scream for joy!! But I knew that would overwhelm him, so I squeezed Jonah’s shoulder and told him happily how overjoyed I was that his body was more comfortable. Some of his tics caused him a lot of pain, so to know that my boy was feeling better was a huge gift.

Sometimes you have to take a leap of faith and know that even if something sounds totally crazy, it may give you light. It may bring changes you couldn’t have even imagined. Sometimes you have to just follow your heart and jump, not knowing exactly where you’ll land, hoping that it’ll be a better spot than you started from. I don’t know if the effects of ozone will be permanent, or short-lived. But what I do know is that my boys’ health has improved. Right now, they are calmer and happier and able to engage in life in a way they never have before. Residential placement is so far from our minds, it seems like a lifetime ago that we worried we wouldn’t be able to parent our own children.

Life is never perfect, and ozone hasn’t perfected anything for us. But it has given us a glimpse of how life is supposed to be. It has given us the gift of our boys- able to live life in a way that hasn’t been possible up until now. I would pay whatever it cost, I would drive as many miles as necessary, I would spend years of sleepless nights worrying about the outcome, if it gave my children a better life. I have no regrets about this decision we made, many weeks ago, in a time of suffocating darkness. I see the light gleaming at the end of this long tunnel. Whatever happens, I’m grateful for this time of discovering new possibilities, for getting to watch my boys live life in a way most people take for granted. I think we're in the middle of the Big Bloom.

Saturday, October 14, 2017

I'll Find Myself Next Year

Every Fall, I think THIS is the school year where I will take my life back. Every child will happily go to school every day without a fight. I will have hours to myself each week day to sew weighted blankets to make other families happy. I will do yoga, walk, write, meditate, create. I will have time to remember who I am after being entrenched in Motherhood for so long without coming up for air. I make plans. And God laughs.

Just when I think a school year is set to go off without a hitch, hitches appear out of thin air.

Our doctor has recommended that Ben and Jonah begin an IV treatment that boosts their immune system so they can fight the war against their Lyme and PANDAS (strep that attacks the nervous system). I mobilized our school team, and we set up homebound tutors for the classes the boys will be missing as they do their treatment- every day for at least three weeks, but maybe six. Jonah started the treatment first, and Ben will begin in a couple weeks.

A week ago, Jonah got a picc line. The day before my birthday. The idea of a picc line, that goes from an insertion point in your arm all the way through a vein up to your heart, completely freaked my boy out. It freaks me out too, but I hide it. The nurse told me I couldn’t be with Jonah while she put in his picc line. I was so angry. But I held it together until we got home and then I called the clinic and let them have a piece of my mind about letting Mamas be with their babies who have anxiety during such a traumatic procedure. The clinic apologized profusely, and said they will make sure this never happens again. Thank you very much.

Jonah was so brave. After he came out of the room from the procedure, he turned gray and had to sit down so he didn’t faint. It was a very hard weekend. Anxiety kept getting the best of him, that idea of the tube snaking through his body. He needed me all weekend; there are some times when one of my kids needs me like air, when they have to be almost touching me at all times in order to survive the extreme anxiety they’re experiencing. That was how our weekend went. Over the past few weeks, we’ve had a large variety of musical beds happening. We put a mattress on our floor for Aidan, because he couldn’t sleep in his own bed because of his worries. Ella finds her way into our bed most nights. Last weekend, Jonah had to sleep in Dad’s spot so he could be with me in case anything happened with his picc line during the night. A few nights ago, Aidan got my spot in bed because he got braces on his bottom teeth and was in such excruciating pain that he rolled on the floor, screaming for hours.

We started Jonah’s IV treatment this past Monday. On the way to the appointment, Jonah was extremely panicky, as any normal person would be. He really really did not want me to make him do this. All weekend he kept asking me if he really had to do this. If this was something that would really help him. Why did he have to go through this agony? I kept calmly supporting him: It will all be ok. This is the worst it will get, everything after this point will be easier. This treatment will absolutely help you. This is going to be so worth it, and when we look back we’ll see what a great idea it was. Temporary hurt for long term gain. Anxiety comes from not knowing how something will be, and after you do something even one time, you won’t be so worried. Hour after hour, I reassured my boy. Minute by minute, walking next to him through this crazy life that seems to be too much so often.

I worried Jonah would refuse to get out of the car once we arrived at the doctor. But we started joking and giggling, and the anxiety lightened just a little. Jonah cooperated beautifully. His nurse was wonderful, explaining everything as it happened. Jonah got all hooked up to the medicine, turned gray for a little while again, and then relief flooded him as he realized this wouldn’t hurt. He wouldn’t feel anything actually. He realized it was actually so easy. He said he was just fine with doing this treatment, and excited to see how it might make him feel better.

Last week, Aidan complained of having blind spots in his vision. I asked him more about it, and it turns out he had been looking at the sun. Aidan’s anxiety and OCD are killer right now. He feels the compulsion to look at a freckle on his arm, or a bracelet he wears, every few seconds. He was outside one day and had long sleeves on, so couldn’t see his freckle. He didn’t have his bracelet on. So he felt the compulsion to look at the sun. A lot. I was instantly alarmed.

We got him in to the eye doctor. She wanted him to see a retina specialist. Both doctors needed to put drops in Aidan’s eyes to dilate them, which is sort of like trying to catch a slippery eel to pry his tiny eyes open and put drops in them: absolute torture. Poor Alex took Aidan to both appointments, so now he knows what it’s like when I go to all these doctors with kids. Sorry, babe.

The retina specialist said that Aidan has solar retinopathy. The sun burnt holes in Aidan’s retinas. The doctor thinks the holes are starting to heal, but it is imperative that Aidan does not look at the sun anymore. Duh. But when it’s your OCD, that’s hard to reason with.

Last weekend, I celebrated my birthday. I took some of the kids to a pumpkin patch- which is outside. I had Aidan wear a hat and sunglasses, AND his bracelet, AND a short-sleeved shirt so he could see his freckle. I suggested that instead of looking at the sun, Aidan tilt just his eyeballs up and look at the brim of his hat. He broke into a grin at this idea and said he’d try.

Aidan has had such extreme anxiety and OCD lately that getting to school has been very difficult many days. I met with his school team last week to talk about ways to support him better. The team decided that the best bet was for me to pull Aidan out early every day (about the time his anxiety ramps up and he feels he must call me and come home immediately) and homeschool him for his last two periods- PE and Health. I have tried very hard to not have to homeschool my kids, and I know that sounds terrible, but they require so much from me when they are home that to imagine having to get knowledge into them as well as all the other battles we have daily is just too much. But apparently this approach may help Aidan, so I have to give it a go.

Ella’s school team decided she would benefit from a 504 Plan. She has struggled every year since Kindergarten, but has been blessed with incredible teachers who led her through the year with unofficial accommodations. This year she needs formal help. Hopefully she’ll start to soar.

Ben is terrified of his IV treatment, and that darn picc line. I can’t blame him. But we’re hopeful that this treatment will beat back the beast of Anxiety and help his body find healing, which he desperately needs.

My goal every day is to get each anxious child to school. Then shower, and possibly have time for breakfast. Then go pick up Jonah for his treatment. That takes a few hours. The plan was to bring Jonah back to school after his treatment, but so far he has felt too sick to do that. We get home from Jonah’s treatment just in time to go pick up Aidan from school. We get home, do some school work for PE and Health. Then Ella gets home, and then we have after school activities for Ella and Ben, and some tutors thrown in there a few days just for fun. Somehow, laundry needs to get done, groceries need to get bought, and food needs to be made. Homework needs to be done, dogs need caring for, and kids need constant TLC to avoid all the minefields their anxiety dishes out. I’m not complaining; I’ve got it down to a science and it’s all under control. But the whole thing is just absurd. Whose life is like this? Absurd.

It can pretty hard to be the Mama, when your kids are suffering in so many ways all at the same time. To maintain my calm spirit and loving heart takes tons of energy. Most of the time I don’t know if what I’m saying is actually true. I listen to my gut, and tell the kids what I feel. I feel that this treatment will improve the boys’ lives, at least to some degree. I know Aidan’s anxiety seems completely overwhelming right now, but soon we’ll look back and see how much he’s overcome. I’ll giggle as I reminisce about the time I had to give in and homeschool a kiddo. I believe everything is going to turn out just fine, after we get through this very very rough patch. But I don’t know any of that for certain. So to lead my sweet clan through the darkness of their anxiety while doing my best to listen to my gut and reassure everyone that we will be fine…it takes a lot of faith. Faith that my intuition is right. Faith that there is a Plan and we WILL be fine. Faith that we’re going through all of this so that I learn even more about crazy things I never thought I’d want to know- like who knew what the heck solar retinopathy was until a week ago??- so that someday I can help other people. Faith.

I wake up at 2:22 am every single night. I lie in bed, thinking, worrying, contemplating, and counting my blessings. Today when I was jolted awake, I thought about how I am so grateful for wonderful parents. Parents who all help in their own ways. My parents came to spend a few days this week, doing our laundry, cooking our dinners, running our errands and picking up kids when I was at treatment with Jonah. They came to cheer us on during this difficult journey; they came to give us a “boost,” as Dad says. Boy, did we need a boost. Because I knew that our laundry was being done and our dinner was being fixed by someone other than me, I had the time, energy and patience to do homework with Ella and Aidan—without getting frustrated. I had time, energy and patience to get Ella and Aidan through their shower routines—without getting frustrated. When you are given the gift of time, energy and patience, when you are normally exceedingly short on all, it feels like a miracle. A beautiful, lovely miracle.

Instead of “finding myself” this school year, I’m intensely concentrating on each of my kids’ needs, trying to soak up all the information possible to make sure they are all ok. Everyone says I need to make sure I take care of myself. Put the oxygen mask on myself before tending to others. Hmm, not gonna happen. My Mama soul is a teensy bit shredded and numb. But if we can rally through the next couple months, maybe our family will find new health, peace, and calm. There’s always next year to “find myself.”

Tuesday, September 19, 2017

Giraffe Fight

Sometimes, our morning routine resembles a giraffe fight. Have you seen giraffes fighting? I know I should be sad that there is strife even in the world of giraffes, but instead all I can do is laugh until my sides hurt. It’s hysterical. You have to Google it. The giraffes sidle up to each other and then WHAP each other with their long, gangly necks. Whap. Whap. Whap. It’s awkward and unexpected and pretty comical.

This is how our mornings are sometimes: awkward, unexpected, and in hindsight, comical.    

Our school year has started off the best of any school year so far in our entire school history. I’m in shock. We have three schools our four kids attend this year, so there’s more juggling on my part. But at each school, there is at least one person who completely has my kiddo’s back. At least one person who is supportive, on board, understanding of my children’s disabilities, and totally wonderful. I’m so used to having to go in, guns blazing, to get my children help at school—this is quite an unexpected gift.

That’s not to say our year is easy sailing, by any means. There have already been sick kids staying home, kids who can’t get to school because of their Anxiety, grades tanking, things forgotten, homework not turned in, more Anxiety, social issues…BUT. This crazy life of mine has made me so cognizant and grateful for all the little things that are going right. I take nothing for granted.

Aidan has had a few tough days. One day, his Anxiety was more than he could handle. I tried my Mama Magic to maneuver him through the morning and tried my best to calm his school fears and get him out the door. You have to be very careful with Aidan, because he is so super sensitive, and if you raise your voice or he perceives that you're mad at him, he shuts down and won’t come out of his shell at all. So you have to maintain your cool at ALL times, which is nearly impossible when you’re in a giraffe fight and that giant neck is coming at you, whapping you when you least expect it. This form of warfare is subtle, but effective.

So I did my very best to have a calm, supportive voice as I tried to get Aidan to the bus stop, although inside I just wanted to YELL at the utter absurdity of all of this. I am envious of families who don’t walk a minefield just trying to get their kids to the bus stop every day. Who don’t wake in turmoil, pretending that everything is fine, hoping everything is fine, wondering if this is the day Anxiety will be back.

I rubbed my boy's back as he lay on the floor, feeling the physical and mental anguish that his Anxiety was churning up inside him. We tried to get to the bottom of his fears so we could sort them out. My little boy was gone, and in his place was that giraffe, whapping his neck all around, lashing out, shutting down, full of insecurities and overwhelm.

I could see I was losing this battle. The bus came and went. My heart sank. This wasn’t my first rodeo; I know this kind of morning all too well. This wasn’t the first day Aidan had had too much anxiety to make it to school this short year, so I got in touch with the teacher who is 100% on Aidan’s side. After some emailing and a phone call, we came up with a plan.          

I calmly and lovingly presented the plan to Aidan. When he felt calm enough, we would drive to school and I would drop him off. His wonderful, incredible Special Ed teacher said she would drop everything to be with Aidan as long as he needed her. If for some reason she was unavailable, we had a back up person to tag team with Aidan. I told him he didn’t need to think about all his worries, he just had to get his body to school. Even just for a short time. Just get there, talk with his teacher- because she had some ideas for how to help him feel better- and then if he needed to, I could pick him up and he could come home.           

Aidan made a counter offer: he would like to stay home for a little while until his red, puffy face went back to normal. And he requested a decaf, almond milk, no whip, mocha frappucino from Starbucks on our way to school. This is his most special treat. 

So here’s an example of when parenting books fail the special needs parent. I know that no parenting expert on Earth would say I should get my kid a special drink after a morning like this. I would be rewarding his misbehavior. He was being bad and he should be punished, not rewarded. But if you parent a child who has special needs, and you know his brain is on fire, which is causing all the anxiety in the first place, you know in your heart of hearts that your child is so good. He is not misbehaving. He is not manipulating you. He is doing the best he can, while struggling with invisible disabilities and illnesses that others can’t see and are too quick to judge. This kid. My boy is sensitive, and beautiful, and perfect, and so many times on Giraffe Mornings, I want to dissolve in a puddle of tears alongside my little giraffe, because I see that life is too much to handle. I get it.

I knew that if I promised Aidan a special Starbucks drink, not only would it be something for him to look forward to on the drive to school, it would momentarily take his mind off his worries, because he’d be distracted. And the best part: he would agree to get into the van. You have to understand, in all the years up until now, if we had an Anxiety Day, my kiddo never made it into the school building. He refused to get on the bus, and it was too dangerous to try to drive him to school myself because of how out of control he was. The fact that he was willing to show up to school, even for a short time, is a monumental improvement and worth all the celebratory mocha frapps in the Universe.

So I agreed to my son’s terms. He calmed down and got his face back to normal, we got a mocha frapp, and we walked into school together. Aidan wanted me to stay with him, but I told him I couldn’t but that his teacher would be with him until he was ready to move on with the day.

I was so proud of him. It doesn’t matter that three hours later, he called from the nurse’s office to come home. The point is he got his body to school on an Anxiety Day!!!! Woot woot!! This kid amazes me. I was so grateful to his Special Ed teacher, because Aidan asked to come home pretty soon after he arrived at school. But his teacher was able to help him work through his Anxiety a bit, and he was able to stay longer. They went to talk to the PE teachers, who Aidan is struggling with. They made it to math class. Then, Aidan asked to come home again. His wise, intuitive teacher realized that this had been a MAJOR accomplishment for Aidan, and that she shouldn’t push him farther than he could handle, so she said Aidan could call me and come home.

Victory. Success. Was the day perfect by “normal-people” standards? Far from it. But for us, it was a tough, but successful, day. I was exhausted and emotional, but we had all worked together as a team to help Aidan get the best possible outcome for his day. After I dropped him off at school that late morning, I felt stupid for crying on my way home. But then I realized what a stressful, challenging, overwhelming task it is to take on a giraffe fight, and come out winning. It takes all my strength, all my creativity, all my fortitude and patience and love to get through a morning like that successfully. It’s completely gut-wrenching and exhausting. So I gave myself permission to feel emotional. I had just fought a giraffe, and my son and I had both come out winners.

Every morning that I walk my children to the bus stop, and they actually GET ON a bus, I rejoice. I rejoice that our day is going the way childhood days are supposed to. I rejoice that my children are successfully handling the things that typical kids do. I rejoice that there was no awkward, insane giraffe fight that morning. Sometimes finding the gifts in this dark journey is tough. But I never know when there will be an Anxiety Day, and so I never take the little victories for granted, and that is a gift.